Sunday, August 9, 2009

Hi Loved Ones..I dropped David off at camp today at noon for 2 whole weeks. Part of me is jumping up and down doing the Happy Dance! I have 2 WHOLE weeks free of David and his issues..

Then there is the other part of me...

The part who got a lump in her throat saying goodbye to him for 2 whole weeks...

The part who wishes that his life was easier... that I didn't so DESPERATELY NEED these 2 weeks break as part of my survival with this damned syndrome.... hell.. I have never sent ANY of my other kids away for 2 weeks.... actually.. I am getting ready to send Alex off to college in 3 weeks and I don't think HE has ever spent 2 whole weeks away from us.. so why is this break so needed????

David is high maintenance... always has been. Probably always will be. His very existence revolves around how many buttons he can push in a day... in an hour... in 15 minutes... you get the picture right? He isn't happy unless there is turmoil.. he can't enjoy a day at the beach... he is ALWAYS worried about what is next... NEXT ACTIVITY... NEXT FOOD OPPORTUNITY... NEXT OPPORTUNITY TO MAKE SOMEONE LIFE DIFFICULT.. this is our reality with him and with PWS... it is not like that with the other 2... I'm not sure why.. but they are both so easy comparatively!!

By this point in the summer I am ready for the week break... ready for not dealing with his issues for 2 weeks... ready to go park my ass in the sand at the beach and not be nagged to death about "what is next" It's hard to explain... part of me feels like a part of me is missing with him gone for 2 whole weeks... and part of me (possibly a bigger part) is so thankful for the break that I feel guilty for how much I am looking forward to it.I know he is well taken care of at camp..... I know he has a blast... I know that he probably misses us but is enjoying his break from us... BUT....

I still feel that pang of guilt that I can't provide the structure he needs...That I am really looking forward to NOT dealing with him and all his issues for 2 whole weeks

Ok.....not sure where this post is going.... so here are a few pictures from today....

David all packed and ready to go

Everyone at camp welcoming the campers!

\ DAVID and he favorite counselor Amy!

In his cabin all unpacked!

With his counselors for the next 2 weeks!

I know he will do just fine... probably "too" fine.. and another little piece of my heart will be ripped out in the process.... life with PWS is just plain ol' hard sometimes....

Tuesday, August 4, 2009

I'm not really sure where the summer has gone, but I already feel like it is slipping away faster than I can possibly enjoy it!

The Knopf Family has been on the go this summer... we had Dave's parents here back in June for the big GRADUATION WEEK.... Alex Graduated from High School: As seemed to be the case every single time we had something to do outside this spring/summer... it rained. So the pictures are not great... I was trying to keep the camera dry but still get a few shots..Alex right after getting his diploma!

Alex and his girlfriend Kourtney

Alex with his Grandparents! David graduated from Middle school the next day: Again... the pictures aren't great...but here are a few

Then on Saturday we had a big family party to celebrate both graduations.. I got a few pictures in before... well... it ummm.... RAINED again. When I tell you it rained... I mean down poured! It went from being a nice sunny afternoon to a monsoon in the matter of a couple of hours!! But we made the best of it anyway...

Here are some of the guys playing a game of horseshoes...Dave spent the week putting the pits in!

Dave's Dad and Uncle with David

That next Monday we went to Alex's college orientation for the day... I can't believe in a few short weeks he is going off to college!! I am going to miss him so much! It is exciting to be getting him ready to go, and the nice thing is that school is only about an hour away so I am sure we will see him often.

So... that was the month of June in a nutshell! I am working on a slide show of our summer vacation at the beach with Ben's birth family... There are too many pictures to share here, but I promise not to leave you hanging for a month before I get it on here. Here are a few "preview" pictures to get you by until I get them all organized:

Other than that, David started at his new school in July, they have a summer program, so its been nice that he has been able to get to know the teachers and some of the kids this summer. He leaves for camp for 2 whole weeks on Sunday, so I have to get him packed and ready to go.

Oh.. and the first night of football was last night...another season is officially underway!!!

Stay tuned for the vacation slide show... I promise to get it done by Friday!!!

"God didn't promise days without pain, laughter without sorrow,sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way." -unknown

Our Journey With Prader-Willi Syndrome

Our journey with Prader-Willi Syndrome started on December 1, 1994 when our son David was born.David is our 4th child. We had no idea that our world was about to change forever, that nothing would ever be the same... or what that would even mean..."Your baby has Prader-Willi Syndrome"The words seemed to float around the room, like they weren't really meant for me to hear. This couldn't be possible because we already had 3 healthy boys. I had prooved 3 times over that I could make healthy babies! That's what it was... a mistake... they had made a terrible mistake... they were talking about somebody elses baby, not mine. I didn't hear what they were saying... these words weren't meant for me. I looked at my husband who was holding David and he had tears rolling down his face, but he was in control, he asked the questions, he was crying... I'd never seen him cry, not like this anyway. I was just sitting there like a silent observer to this scene. I didn't belong here, this wasn't my life. We were taking our baby home today and they were wrong. I would proove it to them. We walk back to the NICU with David to pack his things from his 10 day stay. His nurse gave me a hug and I collapsed to my knees on the NICU floor sobbing... It hit me like a ton of bricks.. I am the mother of a baby with special needs. Some syndrome called Prader-Willi... not sure how we are going to do this, we pack our baby and head for home.The firt couple of years were a blur. David was sickly and we were in and out of the hospital with illness and surgeries. There was endless physical and occupational therapy, it took forever to feed him.. he had an NG tube for almost a year and was on oxygen until he was 3. Jacob was born 13 months after David and we were busier than we ever thought we could be. We had 5 little boys and life was good. But we both had this feeling that something, or someone was missing. Then we are told of a baby who has PWS and was in need of a family and we both knew immediately that this is what we wanted to do. So in September of 1999, Ben joined our family at the age of 5 months. He stole our hearts and life was good. We were busy raising 6 boys, everyone thought we were either saints or just plain crazy for adopting a child with PWS when we already had a child with it. Life was good, Life was busy, we wouldn't change a thing.... but something or someone was missing.In May of 2001 I was put in contact with a family who had a baby girl with PWS. They were making an adoption plan for her and long story short, Caroline Grace Elise came to live with us when she was 7 weeks old. We all fell completely head over heals in love with this baby girl! She was the missing piece to our family. Life is good, life is busy.. Our family is complete.7 kids, 3 with Prader-Willi Syndrome, maybe we are Saints, maybe we are crazy, maybe we're a little of both! Either way, life is good, and we wouldn't change a thing.